By Lydia Makaroff
I had the privilege of attending the Africa Cancer Congress in my role as President of the World Bladder Cancer Patient Coalition. These are some of the lessons that I came away with:
* Collaborate across borders
* Invest in pathologists
* Protect people from being exposed to cancer-causing agents
* Encourage people to quit smoking
* Engage community to raise awareness
* Prioritise mental health
* Financial support changes lives
* Patient education is power
* Invest in the workforce
* Invest in radiotherapy
* Invest in tele-consultations
* Invest in e-learning
* Improve clinical trial design
Collaborate across borders
The African Organization for Research and Training in Cancer (AORTIC) is a prime example of cross-border collaboration. The team at AORTIC, including Managing Director Belmira Rodrigues, work tirelessly to organise the Africa Cancer Congress, facilitate research and training, and encourage collaboration across the African continent.
Leading the National Comprehensive Cancer Network (NCCN) Clinical Practice Guidelines in Oncology Panel for Bladder Cancer, Thomas Flaig spearheaded an initiative with African doctors to tailor these guidelines for practical application in their local context – the NCCN Harmonized Guidelines for Sub-Saharan Africa. The guidelines suggest using ultrasound instead if MRI is unavailable or x-rays if CT scans cannot be used. The guidelines also state that in the event of a BCG shortage, the priority for treatment should be to provide patients with high-risk, non-muscle invasive bladder cancer.
How do you weave a tapestry? One thread at a time
The “Improving Radiology Services in Resource-Constrained Settings” session, led by Dr Farouk Dako, highlighted the critical work of RAD-AID, a non-profit organisation committed to enhancing radiology services in areas with limited resources. It helps develop radiological infrastructure, including the installation and maintenance of essential equipment such as X-ray machines, CT scanners, and MRI machines. Additionally, it assists in establishing IT infrastructure to support these services.
Laura Fernandez Diaz at the Union for International Cancer Control (UICC) helps to rally civil society organisations across the world. The Union equips cancer societies with essential tools and resources, fostering a sense of community, and enhancing advocacy. World Cancer Day is observed annually on 4 February. This global initiative raises awareness and drives action by envisioning a world where preventable cancer deaths are reduced, and access to treatment is available to all.
To bolster cancer control efforts, expanding collaborations is vital. By partnering with entities such as the Union for International Cancer Control and the World Bladder Cancer Patient Coalition, we can engage in joint training initiatives and share ideas, data, and resources. These partnerships provide avenues for exchanging best practices and innovations in cancer care, facilitating a more unified and effective approach to tackling cancer.
“That feeling when you realise that you are about to assemble the brightest minds across the cancer continuum to discuss strategies to shift narratives for cancer patients!”
– Miriam Mutebi, President of the African Organization for Research and Training in Cancer
Invest in Pathologists
We need pathologists to be able to correctly determine what type of bladder cancer people have, which is essential for determining the most effective treatment. The treatment of bladder cancer is based on the results of biopsies and TURBT specimens, focusing on histological type, cancer grade, and the extent of tumour invasion. These criteria help in assessing the likelihood of cancer recurrence and progression.
Prof Nkegoum Blaise, the Permanent Secretary for Cancer Control in Cameroon, highlighted the lack of pathologists in the region. In Cameroon, there are 12 pathologists available, and in Chad, only 2 pathologists for a population of over 17 million people.
Dr Mathias Banzi’s poster on muscle-invasive bladder cancer in Tanzania demonstrated that the types of muscle-invasive bladder cancer prevalent in Tanzania differ from those in Europe, with 54% being squamous cell carcinoma (which begins in the flat cells of the bladder and is often linked to chronic inflammation and Schistosomiasis), 6% being adenocarcinoma (which starts in the glandular cells), and 39% being transitional cell carcinoma (which originates from the bladder’s lining and is generally more treatable when detected early).
Effective treatment starts with accurate diagnosis
From Malawi, the BEED (Bladder Cancer Epidemiology and Early Detection in Africa) study in Malawi study conducted by Charles Mabedi, Valerie McCormack, Florence le Calvez-Kelm, and colleagues from the International Agency for Research on Cancer presented data indicating that 83% of bladder cancer cases were squamous cell carcinoma, 5% were transitional cell carcinoma, and 12% were other or undetermined.
Dr Babacar Sine talked about the profile of bladder tumours in Senegal. Bladder cancer is diagnosed in over 300 people in Senegal each year and is responsible for 3% of cancers in Senegal. Transitional cell carcinoma has recently emerged as the most prevalent histological type (80%), while squamous cell carcinoma, more common in women and people under 40, accounted for 11%. Just over 78% of tumours were muscle-invasive. He highlighted a shift in the dominant histological type from squamous cell carcinoma to urothelial carcinoma, potentially linked to changes in schistosomiasis infestation and smoking habits. These observations were echoed by Senegal urologist Dr Oumar Gaye.
The Associazione Patologi Oltre Frontiera (APOF) is a non-governmental organisation that works in the Middle East and Africa and is led by Vincenzo Pansa, the honorary president. The organisation is composed of pathologists and biologists who volunteer their time to cooperate with local organisations to improve healthcare diagnosis. Their projects include training local healthcare professionals, providing equipment and supplies, and co-establishing diagnostic laboratories.
We can support campaigns to underscore the importance of pathologists in determining the correct cancer type. We can advocate for educational programs for aspiring pathologists and participate in policy discussions for enhanced pathology services.
Protect people from cancer-causing agents
Schistosomiasis, caused by a parasite, is a major risk factor for bladder cancer. It is found in freshwater rivers and lakes and is widespread in sub-Saharan Africa, including 13 out of 14 regions in Senegal. Globally, over 200 million people are affected by Schistosomiasis, predominantly in sub-Saharan Africa, making it one of the most severe endemic diseases in tropical regions.
In Senegal, Schistosomiasis eggs have been found in 14% of bladder cancer cases and showed a significant association with squamous cell carcinoma. In Malawi, when asked about their exposure to unsafe water, 28% of bladder cancer patients had been exposed due to their work in rice farming, and 19% had been exposed due to their work in fishing.
Global efforts, including the work of the Global Schistosomiasis Alliance, demonstrate a commitment to reducing the burden of schistosomiasis. In 2020, despite challenges posed by the COVID-19 pandemic, 77 million people received treatment for schistosomiasis globally, representing a coverage of 32%.
Zimbabwe’s campaign against the bladder-cancer causing schistosomiasis parasite
Exposure to derivatives of polycyclic hydrocarbons, notably benzidine, is a significant concern. This exposure often occurs in industries involving tars, soot, coal combustion, and metallurgy. Additionally, aromatic amines, commonly found in dyes, rubber production, plastinurgy, and pharmaceutical laboratories, pose a substantial risk.
Prevention is the silent hero in the cancer story.
Kenya has established regulations and guidelines to manage and control workplace exposure to hazardous chemicals and substances, including carcinogens. The Directorate of Occupational Safety and Health Services actively monitors and enforces these regulations. Egypt has implemented regulations to control exposure to hazardous substances in manufacturing and construction, including known carcinogens. The Egyptian Environmental Affairs Agency enforces these regulations.
We can help by raising awareness about the risks of exposure to cancer-causing agents in the workplace, advocating for stricter enforcement of existing regulations, and fighting for the development of new ones. We can provide support and educational resources to workers in high-risk industries about the dangers of exposure and preventive measures.
Encourage people to quit smoking
In Senegal, active smoking was observed in 45% of patients and correlated significantly with transitional cell carcinoma. In Malawi, 35% of male bladder cancer patients were tobacco users.
Smoking Kills
Dr Olalekan A. Ayo-Yusuf and Dr Kali from the Africa Tobacco Industry Monitoring and Policy Research Institute in South Africa found that older age, minimal alcohol consumption, and living with other people who do not smoke are linked to the ability of cancer survivors to stop smoking.
Successful stop-smoking interventions include the creation of supportive environments that discourage smoking, offering counselling services to address unhelpful behaviours, and promoting smoke-free homes.
“Smart people make safe choices” mural created by primary school students in South Africa
Engage the community to raise awareness
Dr Sine stressed the need to increase awareness among the Senegalese population about the seriousness of detecting blood in urine. In Senegal, the average age of people with bladder cancer was 62 years, with approximately 62% of the patients being men and 38% being women. In Malawi, the average age was 54 years, with 41% men and 59% women. There is a notably higher proportion of women diagnosed with bladder cancer compared to Europe, hinting at a possible under-awareness, under-diagnosis, and under-treatment of the disease in men.
In Senegal, blood in pee was the most common presentation of bladder cancer (92%). In Malawi, 73% of bladder cancer patients reported blood in their pee, compared to 25% of similar people without bladder cancer.
In Cameroon, 90% of patients with urological cancers arrive late at treatment facilities, and 20% of these patients discontinue their treatment prematurely. In Senegal, more than half of all bladder cancer patients sought medical consultation within 6 months after the onset of their symptoms, 15% sought medical consultation within 6 to 12 months after the start of symptoms, and 24% delayed seeking medical consultation for more than a year. The median overall survival rate of just 12 months for people with muscle-invasive bladder cancer in Tanzania underscored the need for improved awareness and better treatment.
Medicaid Cancer Foundation in Nigeria for a cancer awareness campaign
We had the privilege of meeting Dr Zainab Shinkafi-Bagudu. As the Chief Executive of the Medicaid Cancer Foundation Nigeria and as a board member of the Union for International Cancer Control, Dr Shinkafi-Bagudu is a believer in the strength of unity, asserting:
By building grassroots partnerships instead of working in silos, we can ensure that cancer control is within reach for all.
She acknowledges the vital role of community leaders in mobilising and educating local communities, a factor often overlooked in strategic planning for cancer research and clinical trials. Her charity in Nigeria focuses on training local, well-respected residents as health champions. These individuals disseminate crucial information within their communities and encourage participation in screening and educational programmes, effectively bridging the gap between advanced medical research and grassroots awareness.
The BCI Ghana Team made waves on the airwaves as they geared up for the BCI Ghana Walk for the Cure event. In an appearance on Peace FM radio, the team led by Dr Wiafe Adddai shared insights and important information about cancer, shedding light on the importance of early detection and raising awareness.
The poster titled “The Role of Social Media in Breaking the Silence on Cancer” by Idan Phiri and Biemba K. Maliti highlighted the “Dukutober” initiative by the Zambian Cancer Society. The campaign successfully utilised social media to spread awareness about cancer. Participants shared photos wearing Dukus (headwraps) on social media, symbolising solidarity with cancer patients. People participated to honour those who have passed, support those still fighting, or share their journeys. Beyond awareness, the campaign also raised funds by selling branded merchandise and corporate sponsorships. These funds have provided practical support to many cancer patients and their families. This initiative has played a crucial role in breaking the silence around cancer and promoting early screening, leading to the diagnosis and successful treatment of early-stage cancers.
We can create customised awareness programs tailored to each community’s unique cultural and specific needs, training community leaders to organise and lead awareness campaigns and recognise their efforts through incentives. During Bladder Cancer Awareness Month in May, we can amplify the World Bladder Cancer Patient Coalition’s campaign to encourage people to share their stories and symptoms, leverage local community events, and collaborate with businesses to display posters and distribute informative leaflets.
The Zambian Cancer Society created the “Duku Challenge” to stand in solidarity with cancer patients. The duku is more than just a headwrap. It is a symbol of unity.
Prioritise mental health
Mental wellness is a crucial component of comprehensive cancer care. By integrating psychosocial support systems, healthcare providers can offer a more holistic approach, attending to the mind and body. This dual focus is key to fostering resilience and promoting the overall well-being of those affected by cancer.
Cancer care includes mental wellness
The poster titled “Creating platforms for patient advocacy in Nigeria” by Gloria C. Okwu highlighted the support she received from Project Pink Blue’s Psychological Support Centre. It emphasised the importance of psychosocial support in alleviating the mental health burden of cancer patients and reducing stigma. It sheds light on how it empowers patients to advocate for themselves and others. She stressed the need for patient-focused interventions, capacity building among patients for strategic advocacy, and increased awareness of the psycho-social needs of cancer patients.
We can focus on providing psychosocial support to alleviate the mental health burden on cancer patients, reduce the stigma associated with the disease, and increase awareness about the psychosocial needs of cancer patients and their families.
Cancer survivor Gloria Okwu from Project Pink Blue in Nigeria
Financial support changes lives
As Professor Rose Ihuoma Anorlu, Past President of the African Organization for Research and Training in Cancer, aptly put it:
Poverty is Carcinogenic
Financial support for cancer patients is a critical aspect of addressing the challenges they face. Dr Rokhaya Désirée Niang, a medical oncologist at Idrissa Pouye General Hospital in Dakar, shed light on the daunting financial burden of cancer treatment in Senegal. The numbers are stark—diagnostic imaging costs £471, a staggering 565% of the average monthly minimum wage (£83), while radiotherapy costs £196, equivalent to 235% of the monthly minimum wage.
Under the leadership of Dr Dan Milner, the Access to Oncology Medicines Coalition aims to enhance the availability of cancer medicines and diagnostics in low- and lower-middle-income countries. A landmark achievement was announcing a voluntary licensing agreement for the cancer medicine nilotinib. This agreement, a first in cancer treatment, aligns with its mission to improve access to life-saving cancer medicines worldwide. It demonstrates a collaborative effort between private and public sectors to bridge the equity gap in cancer care.
To break this cycle of financial hardship, the Lancet Oncology Commission for Cancer in Sub-Saharan Africa also suggests increasing investment in ethical health financing social enterprises. Additionally, supporting businesses run by patients and survivors could provide an avenue for economic empowerment, alleviating the financial strain associated with cancer treatment.
We can connect survivors with networks of other entrepreneurs who can provide guidance and support as they start and grow their businesses. We can also share success stories of cancer survivor entrepreneurs to inspire others and highlight the positive impact of entrepreneurship on their quality of life.
Professor Rose Ihuoma Anorlu, Past President of the African Organization for Research and Training in Cancer
Patient education is power
Dr Hannah Simba from the International Agency For Research On Cancer (IARC/WHO) and her team conducted a multinational survey, delving into the translation of oncological terms into African languages and the cultural implications. The survey encompassed responses from 30 countries, uncovering a rich tapestry of 37 languages. Participants were presented with 16 oncological terms, such as ‘cancer’ and ‘radiotherapy,’ and tasked with providing translations in their local languages, accompanied by explanations of the term’s cultural connotations.
Cancer is a word, not a sentence
This approach uncovered fascinating insights, with examples like the Shona word ‘gomarara,’ meaning a parasitic plant, representing ‘cancer’ in Zimbabwe. One participant elaborated, describing it as a plant that grows atop another, often killing or disabling it. In Luganda (Uganda), ‘Kokomo’ was used, conveying the idea that once the disease arrives, there’s no turning back; it will relentlessly consume until death. These findings revealed common threads of fear and tragedy embedded in various languages’ descriptions of cancer. We can remember that:
Terms like “terminal”, “incurable”, “radical treatment”, and “The Big C” carry negative implications. We can collaborate with local communities to create culturally sensitive oncology terms, enhancing cancer awareness and dialogue, and consider adopting alternative terms such as “advanced”, “chronic”, “intensive treatment”, and simply “cancer.”
Dr Simba from the International Agency For Research On Cancer asks “What is cancer in your language?”
Invest in the workforce
The Lancet Commission for Cancer in Sub-Saharan Africa emphasised that investing in the healthcare workforce is crucial for cancer care. The poster titled “An assessment of the surgical oncology case volume within the public sector in Tanzania” by Nathan Brand, Doruk Ozgediz, and colleagues highlighted the critical gap in cancer care. In 2022, only 4,248 cancer surgeries were performed nationwide, a mere 25% of the estimated surgeries needed. The majority of bladder cancer operations were palliative rather than curative.
Equip, educate, empower healthcare workers
I met with Frehiwot Birhanu, Jessica Joseph, and Chifundo Makwaka from the Clinton Health Access Initiative (CHAI), founded in 2002. In Senegal, the Clinton Health Access Initiative supports the Universal Health Coverage Agency and the Ministry of Health in mapping resources, tracking expenditures across the healthcare system, and identifying gaps in the national free-care program for children under five.
Investing in our healthcare workforce means ensuring they are fairly compensated and creating a supportive environment to enable them to provide the best possible care. We can advocate for continuous professional development, mentorship, and providing the right tools and equipment.
African Cancer Leaders Institute Class of 2023
Invest in radiotherapy
Radiotherapy stands out as a non-invasive and highly effective cancer treatment, offering an alternative to surgical procedures for some cancer patients. In high-resource areas, it provides the option of organ-sparing therapy, which can preserve the function of organs affected by cancer. Additionally, radiotherapy becomes a lifeline in regions where surgical resources are scarce or unavailable, providing a viable treatment option.
The radiotherapy sessions at the Africa Cancer Congress highlighted advancements in this field, demonstrating the evolving landscape of radiotherapy services and the increasing use of AI in medical imaging for more precise, efficient, and accessible cancer care.
Bring radiotherapy to all in need
The “Rapid Deployment of Radiation Therapy Treatments in Uganda” project, led by Dr Baozhou Sun in collaboration with the Uganda Cancer Institute, Makerere University, and Washington University, aims to adopt a highly efficient and cost-effective approach for linear accelerator deployment. This collaborative effort seeks to improve radiotherapy quality and safety, enhance efficiency, reduce costs, and set a precedent for implementing similar technologies elsewhere.
We can raise awareness about the role of radiotherapy in bladder cancer treatment and collaborate with healthcare institutions to bridge gaps in radiotherapy services. We can provide educational resources and support to patients.
A 52-year-old woman with bladder cancer lies under a radiotherapy simulator used to pinpoint areas to treat at the Korle Bu Teaching Hospital in Ghana
Invest in teleconsultations
The Lancet Oncology Commission for Cancer in Sub-Saharan Africa strongly advocates for investing in telehealth. This includes broadening the deployment of digital health solutions to tackle the region’s escalating cancer burden and disparities.
As the CEO of Tech Care for All in East Africa, Dr Benson Chuma leads the charge in improving eHealth across the region. Tech Care for All supports healthcare providers in effectively reaching patients in remote areas. They also assist medical institutions in cost-effectively expanding their services. Their telemedicine platform, which facilitates virtual consultations by capturing various physiological and clinical parameters, has been implemented in over 2,200 locations globally. This initiative enhances the accessibility and quality of healthcare services, especially in underserved communities.
Empower remote areas with telehealth
Project ECHO (Extension for Community Healthcare Outcomes) is an innovative and transformative program that is crucial in improving cancer care, particularly in underserved communities. This collaborative model connects healthcare professionals, specialists, and experts with primary care providers and clinicians, enabling them to share knowledge, expertise, and best practices in cancer diagnosis and treatment. Through virtual clinics and telehealth technology, Project ECHO expands access to specialised cancer care in areas where it may be limited. It empowers healthcare teams with the latest advancements, allowing them to provide high-quality cancer care to their patients. By fostering a community of learning and support, Project ECHO contributes significantly to enhancing the overall quality of cancer care and improving outcomes for individuals affected by this devastating disease.
For example, Project ECHO collaborated with the University of New Mexico Cancer Center to support patients with colorectal cancer. Cancer patients and their families were invited to participate in teleECHO clinics. During these sessions, patients received information about their disease, including treatment options, management of side effects, nutritional advice, and psychological support. This direct engagement allowed patients to voice their concerns, ask questions, and gain a better understanding of their condition, leading to improved self-care and management of their cancer.
We can advocate for patient-centric telehealth services when appropriate, including the choice of virtual or face-to-face consultations, remote monitoring of treatment progress, and the choice of digital or traditional platforms for patient education and support.
The Project ECHO (Extension for Community Healthcare Outcomes) strategy to amplify patient care and provider education while streamlining healthcare systems to increase access, quality, and affordability.
Invest in e-learning
One poster titled “Health professionals’ knowledge, attitude, practice, and access to infrastructure to use e-learning in Ethiopia,” led by SS Rossner and colleagues from Addis Ababa University focused on a region experiencing disparities in access to educational resources. Many healthcare professionals use the internet daily, yet face barriers such as limited internet availability and high costs. Most respondents expressed a positive attitude towards e-learning and a willingness to improve their skills in this area. The study identified a gap in digital literacy and internet access among female health professionals. These findings underscore the need for investment in local internet infrastructure and targeted efforts to enhance digital literacy, particularly among women.
Smart learning for smart healthcare
The charity eCancer, led by Chief Executive Danny Burke, offers a range of eLearning courses that provide continuing medical education (CME) to health professionals. For example, their course on Cancer Pain Management is designed for oncologists, nurses, palliative care specialists, and other healthcare professionals. Learners engage with interactive materials, including expert video lectures, case studies, and quizzes. These resources provide a comprehensive understanding of pain management principles, how to tailor pain management strategies to individual patients, and the importance of a multidisciplinary approach.
We can adapt e-learning programs for smartphone compatibility, establish a feedback mechanism, host online workshops, and ensure accessibility for disabled people.
Thank you to the team at African Agenda for organising the conference
Improve clinical trial design
The International Cancer Institute’s strategies for boosting retention in clinical trials include community engagement, flexible scheduling to accommodate participants, creation of wellness spaces for comfort, providing transportation, collaboration with patient advocates for informed participation, employing clinical navigators to guide patients, regular communication to keep participants informed and engaged, skill development to empower participants, and designing trials that are relevant and beneficial to the population involved. These approaches focus on participant comfort, accessibility, and ensuring that trials are meaningful and applicable to those who take part.
Relevant trials for real-world impact
For example, the International Cancer Institute provides a free hostel in the style of a Ronald McDonald House beside one of their hospitals. It has a 13-bed capacity and has welcomed 8,000 guests, including 4,000 receiving chemotherapies. They also provide skills training, including tailoring, weaving, painting, farming, and beadwork, as well as psychosocial support and day care.
Tinashe Adrian Mazhindu conducted a study at the University of Zimbabwe to see how people in Zimbabwe respond to chemotherapy treatment. It was the first to check if the usual advice for how much chemotherapy to give, based on certain genetic factors, works for African patients. Surprisingly, even though the patients didn’t have the usual genetic signs that predict bad reactions to the medicine, one-third still had serious side effects, more than seen in other groups. His study also found that a person’s body size and weight play a role in these reactions. He concluded that the genetic signs doctors usually look for to adjust chemotherapy doses might not work the same for everyone, especially in different ethnic groups.
We can advocate for participant-centric approaches like community engagement, flexible scheduling, and supportive amenities like wellness spaces and transportation. We can encourage researchers to incorporate patient advocates and clinical navigators, and maintaining regular communication can enhance trial participation and retention. By emphasising the development of relevant and practical trials, we can help ensure that research aligns with bladder cancer patients’ real-world needs.
This mural at the United Nations headquarters in Senegal symbolises the Sustainable Development Goals of good health, quality education, gender equality, and clean water.
Conclusion
The Africa Cancer Congress provided practical insights for cancer control. Key learnings include the importance of international collaboration, the essential role of pathologists in accurate diagnosis, and the need for effective public health measures to reduce exposure to carcinogens. The congress also emphasised cancer symptom awareness, mental health support, patient education, and healthcare workforce strengthening. It highlighted the benefits of teleconsultations, e-learning, and innovative clinical trial designs. These approaches can inform our own strategies for enhancing cancer care and treatment outcomes.